Friday, February 18, 2011

ASD and PTSD

N.B.: I typically wait a few weeks to re-post my Hopeful Parents entries on my own blog, but this one seems to have resonated with parents to a degree I hadn't anticipated. Between the comments and e-mails I've received and the notification on Facebook that says 254 people have shared the link, I'm thinking that this is a subject that has not gotten enough attention and that it's a message that many parents need to hear. Since the shelf-life of posts on Hopeful Parents is relatively brief (because there are two new posts every day), I think it might continue to reach more people here, where posts tend to linger on the home page a lot longer.

This post originally appeared on Hopeful Parents on February 11, 2011.


In her book Making Peace With Autism, Susan Senator writes of the periods when her family must manage her son’s most difficult behavior, “we live as if under siege.”

In her blog, Jess from A Diary of a Mom talks about her feelings in the early days following her daughter’s diagnosis as “that awful, combustible mixture of heart-wrenching pain and abject fear.”

In the archives of my Twitter feed is a tweet I wrote during a particularly difficult school vacation, when Bud’s behavior made me afraid to leave the house with him: “I feel like a hostage.”

As anyone who reads us knows, Susan, Jess, and I love our autistic children. We truly, madly, deeply love them. We celebrate them. We advocate for them. And yet, each of us has experienced intense feelings of hopelessness, helplessness, and fear.

I heard the same dichotomous feelings echoed by other women a few weekends ago, when I attended a social function with a phenomenal group of autism moms. As I’d expected, over the course of our evening together, there was plenty of IEP talk, plenty of been-there-done-that edification, and plenty of laughing so hard it hurt. But there were also more tears than I’d expected. There was more vulnerability than I’d predicted - more fragility, more shared feelings of aloneness, more compared notes on the emotional and physical tolls that this autism parenting journey was taking on the women around the room.

It was in the middle of one of our more heart-rending conversations that one of the moms, whose husband has been serving active duty in the military, said, “You know what this is, right? This is PTSD. Post-Traumatic Stress Disorder. It really is.”

The group fell silent.

Then people started sharing. The physical reaction to loud noises. The sleepless nights. The ceaseless anxiety. The sensory overload. The fear.

Not their children: Them.

The diagnosis resonated – not for everyone, but for some. I watched as faces changed, as moms considered – perhaps for the first time – that their feelings and their troubles were not the cause of some personal inadequacy or weakness or inability to cope, but were instead the reasonable response of a reasonable person who had been living with unreasonable demands without reasonable support for an unreasonable length of time. I watched as they looked at each other – but YOU – so strong – so together – YOU feel this way, too?

It was a powerful moment.

I walked away thinking that it was a moment that should be shared – that there are probably many parents of autistic children who think that their pain, anxiety, and feelings of hopelessness are theirs alone, and, worse, are an indication that they are just not capable of parenting their children. So, I went home and started Googling. I landed on a page from the National Institutes of Health that lists the symptoms of Post-Traumatic Stress Disorder. The description below belongs to the NIH, but the bolding is mine; it highlights the symptoms that I heard my friends identify in themselves:

Symptoms of PTSD fall into three main categories:

1. Repeated "reliving" of the event, which disturbs day-to-day activity
■Flashback episodes, where the event seems to be happening again and again
Recurrent distressing memories of the event
■Repeated dreams of the event
■Physical reactions to situations that remind you of the traumatic event

2. Avoidance
Emotional "numbing," or feeling as though you don’t care about anything
■Feelings of detachment
■Inability to remember important aspects of the trauma
■Lack of interest in normal activities
■Less expression of moods
■Staying away from places, people, or objects that remind you of the event
■Sense of having no future

3. Arousal
Difficulty concentrating
■Exaggerated response to things that startle you
■Excess awareness (hypervigilance)
■Irritability or outbursts of anger
■Sleeping difficulties

You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
Agitation, or excitability
■Dizziness
■Fainting
Feeling your heart beat in your chest (palpitations)
■Fever
Headache
■Paleness

It’s important to note that PTSD is characterized by symptoms that persist for more than a month – and that the items I’ve highlighted here are those that have been persistent and unmitigated for my friends. Symptoms resolved within a month – those I haven’t addressed here - are considered manifestations of Acute Stress Disorder (and, no, the irony that it shares its acronym with Autism Spectrum Disorder is not lost on me).

The source of my friends’ symptoms - the identified “trauma” - varied from woman to woman. For some, it was the impact and subsequent upheaval of the diagnosis itself. For others, it was an event - or series of events - involving their children’s aggressive behavior or uncontrollable tantrums or self-injurious behavior or indescribable fear. For others, it was the toll exacted by constant vigilance - living life, day after day, in a metaphorical foxhole, watching and waiting for the next attack, but never being sure when it would come, how long it would last, and what kind of devastation it would leave behind.

For some women in the group - more, actually, than I would have imagined - autism emerged in their lives in the wake of another trauma, the physical and emotional impact of which had not been fully resolved. Already struggling, already vulnerable, already fragile, they found their symptoms – the reliving, the avoidance, the arousal – not just heightened, but compounded by parenting a child with autism - more insidious, more difficult to pinpoint, and, somehow, more easily assumed by them to be the result of their own personal failing.

I hope that as you read this post, you don’t see yourself in its words. But if you do – IF YOU DO – listen to me: you are not experiencing these things because you are weak or because you're a bad parent or because you’re just not trying hard enough. You are experiencing these things because you are a reasonable person who has been living with unreasonable demands without reasonable support for an unreasonable length of time.

And it can get better. Here’s what you can do:

Read about treatment options. Here. And here. And here.

Make an appointment with your physician or with a therapist. Print the list from the National Institutes of Health, highlight the symptoms you have, and bring the list with you to the appointment. Read this post from Jess at A Diary of a Mom if you start to lose your nerve. Better yet, print it out and bring that with you, too.

Find a support group. Don’t find a group of angry parents who get together and spin their wheels while they rage against the oppressive system. Though they may call themselves “support groups,” in my experience, those groups are toxic. Find a group of people who want to talk through the hard stuff, but who are forward-thinking problem-solvers. If you can’t find one in your local community, take the advice of Boy Wonder’s Mom and find one online. Look for people who are saying things that resonate with you, then join the conversation. Don’t be afraid to jump in – bloggers are blogging because they want to connect. People are joining online communities and listservs because they are looking for others who understand. Find them.

If you feel under siege, if you feel heart-wrenching pain and abject fear, if you feel like a hostage, then know these two things:

You are not alone, and

It will get better.

54 comments:

mkozmik said...

I agree. I'm so there with you. PTSD is exactly what I've experienced on a daily basis for the past 13 years.

How on earth do we do it?

Thanks for yet another great blog post!

kp said...

I believe everything you've said is completely true of many parents of special needs children. But I wonder is it really POST traumatic, since we go through various traumas throughout the course of our children's lives, sometimes daily?

Regardless of the official diagnosis, every parent of a child with special needs of any kind (mental, physical, or what have you) needs to know that it's not their fault, and they are not alone. Thank you for sharing!

MOM-NOS said...

KP, an anonymous commenter made a similar commment on the original post at Hopeful Parents, writing:

I think for many of us the true acronym would be OTSD---Ongoing Traumatic Stress Disorder. It isn't "post"---we're not returning soldiers, back from a war, trying to adjust to peacetime. Our battles are often invisible to most of the world, but they continue. Our ways of coping sometimes improve as time and experience accrue, but speaking for myself, I become more worn as the years progress, mortality is more consciously present, and the urgent need for a creative response to the status quo is undiminished.

You can read additional comments here.

j* said...

And I'll be sharing this blog once again....

Lynn said...

This reminds me of another article that I read with the headline "Autism Moms Have Stress Similar to Combat Soldiers".
http://www.disabilityscoop.com/2009/11/10/autism-moms-stress/6121/

So true. Great advice on the support groups as well.

Kitty Kay said...

You put what I haven't been able to in words. I will be sharing this. Thanks

Royal Ranch said...

I am so glad that you got as many responses as you did. I read this blog when it was originally posted, and have thought about it multiple times since then. It applies to so many people...Excellent work!

Anonymous said...

Thank you.

Crazee Teacher Lady said...

Oh my gosh. You described everything I felt from the time my son was 4 until he turned 14 or so. Not that he was suddenly cured, but his behavior improved dramatically and I could take him out in public. At age 19 my son is "quirky" and sweet which is a far cry from those early days. When I think back to those days I still feel tightness in my chest. Thanks for the post. I am sure many moms will be helped by it.

Estee said...

It's important that no one feel alone. I underwent this while going through a health crisis and divorce and this is how I try to deal with it: http://www.todaysparent.com/lifeasparent/familiesneeds/article.jsp?content=20110124_105533_10992&page=1

AmyLK said...

Oh wow. the power of this post. I had never thought of my days and reactions as PTSD. Time to explore this further with my therapist and Dr.

Thank you.

Anonymous said...

Wow. Thank you. I have told myself this is what I have but never had the guts to say it out loud lest people laugh or judge. How dare I complain, when my gorgeous, engaging son is doing so well most of the time? But then he has a rage incident and I slip into reliving the early days, watching him hit his therapist with a chair, trying to break windows, throw himself over banisters, running into the street, me praying, please god, just let me keep him alive today. I mutter a demented Xmas carol under my breath (Let it go, let it go, let it go...) and fight off the images.

Thanks for pointing me to other readings about this and as always for writing honestly about important issues with such insight and compassion.

Red Shoes, Autism Blues said...

When I read this the first time, it spoke to me, not because I relate to all of the criteria for PTSD or OTSD, which may be more appropriate, but because I didn't realize how truly pervasive the numbing is in my life. I wrote about it as well on my blog because until I read this posting, I didn't honestly realize what was going on with me and my emotions. I had always projected my energy to my son, but hadn't really looked deeply at how autism impacts me and my emotions. Thank you, Mom-NOS for sparking this realization, this epiphany if you will, in me.

Rachel said...

I just started sobbing at my desk. Of course. PTSD. I'm an EMT...I should know better. We watch out for it all the time after hard calls, but never after life hits us hard.

But am I the only one who is thinking "who will take care of my son while I take care of myself?"??
(ironic....my word verification is a form of hyper!)

Anonymous said...

I experienced PTSD after being kidnapped while in college, and have been so angry with myself for not "moving past it". I never connected that this new set of stresses were keeping my wounds fresh.

Nicole said...

I'm just in tears reading this. This is me. This is my family.

Within the last year my husband and I have had major health problems that are rare, unpredictable and come for no apparent cause. I have been diagnosed with Addison's disease, and Lupus. My husband keeps going in to Anaphylactic shock with no known trigger. 3 times so far in the last 12 months. Add on to it that within this same year we finally got a diagnosis for our son of Asperger's and our daughter was diagnosed with Tourette's syndrome. I feel like we are in a sinking ship. Everything is incurable and has no known cause. Everything is treatable but not really. Idiopathic is the word they keep telling us and I hate that we are suffering so for "no known cause".

Every day I feel like something new and horrible and unfixable is going to "attack" us and make life even more difficult than it already is.

While we've known something was amiss in our son for years (he is now 5)it still is so painful to know what IT is and to see the struggles he goes through and by default our whole family goes through each and every day.

Every day brings happiness as both kids are amazing, smart and loved so very much, but every single day is also a struggle. Some days it is a struggle just to remember and recognize the happiness buried in the bouncing, tantrums, tics, medications, doctors appointments, therapy appointments, just getting groceries at the store with a child who doesn't want to go anywhere ever.

It just truly is PTSD just as real and as painful and scary as if we had seen combat. Quite honestly some days it feels like a war against these diseases/syndromes. Some days it is actual hand to hand combat with this horrible enemy within my beautiful children. Holding my daughters arms so she can stop the pushing on her face tic. Trying to keep my sons seatbelt buckled when he keeps taking it off. Grabbing his hand before he walks in to the busy street when he pulls away abruptly.

The hardest part is that our tour of duty is never ending. We are on duty every day, all night, all alone, just the 4 of us and we have no end in sight. No finish line or welcome home. This war is our home, our life.



Thank you for saying what I have been feeling for so long now. Thank you for making me feel validated instead of weak and crazy.

laurmouse said...

Wow! How true is this? This is how I have been living for the last 24 years, and it is even worse now than the earlier years. My son was misdiagnosed and therefore did not get the proper treatment. He is an adult now,and has disintegrated. We cannot find help, and the help we can find, he isn't able to handle. Life with my beautiful little boy is more of a living hell than when he was 5. It is like torture for him as well as me. I can't seem to find any support anywhere! Does anyone have any suggestions?

Paul said...

For many years, and talking to thousands of parents in a supportive way, I now automatically ask, who is the born worrier in the parents? I have found that anxiety in a parent is often found where there is a child with ADHD and or Autisim, yes I can identify with PTSD, but I can also equate with genetic anxiety disorders and Autisim, what came first?

Anonymous said...

I can so relate, I am a 50+ grandma.I have raising my Grandson Jr. for about 8mths now. His father(my son) is with us too.Mom( she's a long story) didn't want to deal with him. Since they Jr and son have been with us.I have had him tested for everything..with the help of Early Education Intervention. With their help and lot's of paperwork and meetings. Jr was diognosed in Nov. 2010 with Autisum(was no suprise..he has a half sister with ashburger). BUT he got home theraphys and will stsrt special needs pre-school on his 3rd BD..Feb 28th..It is such a blessing that he will and is getting the help early.!The hardest part for me is....that I has MS..and stress..and fatigue is a very big part of my everyday..But I still wouldn't change not keeping him to raise..He has this Grandma Heart and Soul..<3..ty for reading a very small(BUT)big part of my life..:-)

Julie said...

Thank you for posting this. My husband and I often think that PTSD is what is happening to our whole family. We have 5 children, all on the spectrum, 1 of which is severely self injurious and aggressive. We live from one rage to the next, trying to protect our other kids and ourselves, never knowing how long it will last or who he will hurt. This happens anywhere fron 1 to 8 times a day. We all have the symptoms posted by NIH...I don't know how to change things. No time for support groups...I also agree about the "support groups"...Ive pretty much given up on them. I guess my real question is how do you help nonverbal autistic children who are showing signs of PTSD, or yourself for that matter, when the source of the stress isn't going anywhere?

Anonymous said...

I agree with kp. We need to identify that it is a daily stress which we deal with, and secondly figure out how to relieve that stress, be it blogging with other parents, exercise, games, mini-vacations, etc. We need to take care of ourselves so that we can care for our families.

Anonymous said...

Oh my goodness. You have so hit the nail on the head. You have described me to a tee. Even as I sat there reading this I was telling myself I wasn't allowed to cry because it might set my son or daughter off. I will definitely be sharing this with my friends. you have given me a whole new perspective on the question I find myself asking myself everday, "What in the world is wrong with me? What is my problem?" Thank you Thank you Thank you.

mommylebron said...

Wow, I feel like I just had a great revelation. My 10yo dd has bipolar disorder, Aspergers, and ADHD. Everything you said resonated with and I look forward to reading more!

Anonymous said...

I had written a long comment for this... but I erased it. Some days I am so overwhelmed and tired. I am overwhelmed with stress, but not as much as I am with the fact that my heart breaks daily for my affected 19 year old son who knows that he is 'different' but dreams of a career (he is going to college) driving a car, having a wife and children.... and perhaps friends that would invite him to do something once in a while. Is is moderately affected...enough so that these dreams/goals may not happen (it is just reality) but I still encourage him and drive him 64 miles to college 2 days a week. It's difficult... he is cognitive enough to understand he is different and what he wants, but affected moderately to the point that for instance, he can pass certification tests for computer technology, but doesn't hold up in an interview. Life is hard... but you just have to keep moving forward. No matter what... you just have to put one foot forward...
Over these past 15 years of raising my son, I was diagnosed with General anxiety disorder, ocd, ptsd, bi polar disorder. A broken heart and shattered dreams aren't without consequence. But I would lay down my life and my sanity any day to see my son be everything that he chooses despite the autism that throws constant road blocks at us. I don't have guilt feelings about his diagnosis, I have a broken heart... on a daily basis. It is like a wound that doesn't heal... but he is my son and he is worth every moment of hard work, dedication, frustration, and panic attack. He is my son, he is not autism...and we will continue to fight how it affects him regardless of what it does to "me". If my heart is beating, I will continue on... one foot in front of the other, one minute at a time.

Anonymous said...

As a teacher in an ASD special education classroom the article resonated with me as well. I have experienced many PTSD experiences over the years, as have almost all the parents. Even after the children move on, the effects are still there. It does not matter which student or how long you have known them, the PTSD is definitely apart of the job description. I love each of the students for who they are and rejoice in each of their accomplishments (and even some failures ~ as learning sometimes needs those failures). I would not change my job despite the tough days, setbacks and PTSD. I agree with kp in that it is certainly Ongoing.

dawnelise said...

So very, very true.

As to your statement about women who were still in the throws of another trauma when the diagnosis came, my son had been born at 28 weeks. Then, he met each milestone and we ducked and dodged every known (at that time) consequence of a premature birth. At age two and a half my son was discharged from all therapies, having tested as age appropriate. My second son was born a few weeks later and, finally, my husband and I were feeling what new parents are allowed to feel. Six months later, our oldest son was diagnosed with Autism.

I've often tried to explain how I feel to my family and friends whose children are typically developing. I've likened it to the death of a loved one, in that a devasting blow is dealt and your life is totalled. Then you grieve, and grieve and grieve some more. Where our autism diagnosis forges its own path is that time does not heal this wound. I am not sent flowers, brought meals or put on prayer chains. As time passes and I learn more about autism, I become more afraid, more isolated and more misunderstood. And while I certainly celebrate his progress and am grateful that he's not more severe, I am re-traumatized with each setback, each time he is left out or teased and each new issue that surfaces because he is getting older.

Thank you for pointing out that I am a reasonable person living with unreasonable circumstances. I can remember that the next time I am feeling inadequate myself or impatient with my children. This was a most beautiful message.

tattooedmommy said...

I have been dealing with this for 14 years now with my son who is autistic. I recently have been to a counselor and was diagnosed with PTSD. I know part of it is from things I have been through growing up and as an adult but I read this and I wonder how much of this is due to what I deal with almost on a daily basis. My son is only 14 but he is 6' tall and weighs 230 pounds. Sometimes his rages scare the hell out of me. I just try and remind myself that no matter how big he gets this is a child and I can't let him get the upper hand, to stay calm and make sure he knows his boundaries.

We do what we we do because we are parents and we have to. Giving up is not an option and so we keep on going everyday!

It does help to know that I am not alone and that others deal with this too. Sometimes I feel so very alone!

much afraid said...

My son, almost 19, has many aspects of ASD as well as a diagnosis of Down syndrome. Getting an ASD dx has been near to impossible, because some of the symptoms that would qualify are also symptoms of DS.

Since his "conversion" to ASD behavior at around age four, I have carried the symptoms of PTSD. Eventually it dawned on me what I was going through, but I still thought I was alone, so thank you for naming it, and for showing me that others mothers have it too.

forestcats said...

I've attended several AOA (American Osteopathic Association) conventions and for the past 3 years the courses on PTSD have been fascinating. Experts from Walter Reed have spoken on what does and doesn't work with treatments for soldiers. They have also spoken on the type of person more susceptible. Another practitioner from rural GA found in his small community that over 50% of the women had at some time suffered an experience that led to PTSD.
Yet England had refused to recognize PTSD until 2 years ago for their soldiers.

I find it odd that most people can accept shock as a diagnosis but refuse to acknowledge PTSD.

Becbeq said...

Um, uh, well, guess I should wipe the tears away before typing. So THAT'S the problem. My son was suspected autistic at 2 and received early intervention. "Officially" diagnosed at 3 and is now mainstreaming in 6th grade.

Hubby was laid off after 9/11 hit the economy and was unemployed for 2 years as he dealt with the depression our son's diagnoses + unemployment caused. I couldn't let go because someone had to get son to his therapies and we have a younger daughter as well. (She's neurotypical and in the gifted program)

Hubby finally went to work in Basra Iraq for 5 months to get back into federal government employment. When he came back, he worked out of area and was only home on the weekends. He did what he had to do to support us, but geez it was hard!

Son was diagnosed with Cyclical Vomiting Syndrome in 2nd grade when he lost 20% of his body weight, couldn't keep down food and ended up hospitalized for a week. After a year breather, our school system started degrading and we made the choice to move across country to a state we had never been to before for a better system. Best choice we ever made, but it was hard.

4th grade was better, but daughter had some issues that needed therapy due to the move, the disabled brother, etc. et al. Siblings need our attention too. And hubby was diagnosed with Crohn's Disease, was constantly in pain and lost too much weight. (He's stabilized now)

5th grade, son's migraines started up again and he was hospitalized 2 separate times due to them. This year is 6th grade. Son has missed a lot of school and his team of doctors have not been able to figure out what the problem is - it's not migraines. This week we were discussing that his symptoms more line up with panic attacks then anything else. Makes sense he'd be anxious anytime anything started hurting - a month long migraine would do that to you.

I've been clinically depressed since 13. Diagnosed at 28 pre-kids. During my son's problems with CVS I was hospitalized with what my medical provider thought was a heart attack. It was my first ever Panic attack. I'm on medication for depression & anxiety currently. Hm, wonder why???? Think I'll call and schedule that counseling appointment now.

Didn't mean to write a book, but boy that felt good to get out.

Patty said...

This is a great article! So validating! I would like to add that children with ASD would EASLIY meet the criteria for PTSD in many cases.
Also, siblings have similar experiences. Our youngest child has been traumatized by the tantrums and outbursts of her sister. It is so challenging to provide what they each need in those heated, memorable moments. And yes, as a parent, when it is over, I definitely show symptoms of PTSD.
Thank you for bringing to light such and important topic.

CrazyChel said...

Thank you so much for sharing, it was hard for me not to cry as I read this because it does hit so close to home. Your explanation was perfect though and I will be using it to help my extended friends and family understand just exactly the trauma our family faces daily.
So grateful for my fantastic group of ASD moms I can lean on!

Anonymous said...

I relate to this, my son is now 20 and great. Mot cured but doing wonderfully, When he was younger it was hard to get people including doctors in our area to understand autism. I would try avoid anywhere busy or noisey if possible ( which in small rural area was hard because there wasn't available child care so i took him every where i had to go) but years later i noticed a lot of his quirk like not touching avoiding eye contact busy palces and a whole list of other i seem to adapt including insomnia. As he got older it got easier He still has his quirks but he is the kindest most thoughtful man he has a heart of gold. We stand up for our children and fight for them with no regard for ourselves or the strees it causes our family. My daughter has had to deal with alot from peoople making fun of her brother to rude comments and by doing so she has growed up to be one of his best advocates, and the most organized dependable people i know.

AA said...

I'm completely speechless..... I really thought I was just crazy!!!!! Thankgoodness for this article. I will be forwarding it to everyone I know. Thank you.

Anonymous said...

I so wish there was someone or something that could help but there isn't. It's easy to say get help but sometimes help isn't out there. We don't have insurance because I can't work because of my child and we can't afford it out of pocket and the local mental health will only see you if your suicidal or homicidal so what is the option then? I am 12 years into a life of dealing with asd with no hope of an end in sight and what was me has been gone so long I can't even remember what I was like before this diagnosis... And it seems like I will always have a toddler trapped in an adult sized body and in my state there are NO resources he is too high functioning so we just try to survive day to day and I don't care what anyone says I do feel guilty for not being able to do more and someday not wanting to do more

Susan Goewey said...

I don't know that it "gets better" so much as you get used to it and when it hits you, you know what to do to keep from spiralling further down. But it will return depending on your circumstances esp. when you're hit with a new challenge (sib issues, other illnesses, and, especially regression of your child) causing "Grief Bursts" not unlike PTSD (I wrote about /Asperger’s Digest. “Handling the ‘Grief Bursts’ of Autism,” May/June 2010) You really have to be gentle with yourself and use every coping mechanism you have, _especially_ you must find a community of support ... b/c if you feel alone in your pain it is so much worse. ANd yes, it is NOT "Post" it is Ongoing. "OTSD"...Which is why it is so very difficult.

MOM-NOS said...

Anonymous, I'm so sorry that things feel so hopeless right now. Can you tell me what state you're in? Maybe I can mobilize the "village" to help you identify some resources that you might not be aware of.

Staci said...

THANK YOU THANK YOU THANK YOU!!

Amy said...

I was diagnosed with PTSD when I finally became suicidal and checked myself into a mental institution from the stress of my precious son, Jonah, who has behavioral problems that have ramped up to uncontrollable rage and aggression, became so bad that I was walking on ice and, frankly, became an abused mom. Thank you for sharing your story and the resources...I will be back.

David N. Andrews M. Ed., C. P. S. E. said...

This is going to alarm you somewhat. I'm and autistsic guy living in Finland and have experienced the Finnish model for 'supporting' autistic people. I shall now show in the list below what I deal with most of the days I'm alive:

Symptoms of PTSD fall into three main categories:

1. Repeated "reliving" of the event, which disturbs day-to-day activity
- Flashback episodes, where the event seems to be happening again and again
- Recurrent distressing memories of the event
- Repeated dreams of the event
- Physical reactions to situations that remind you of the traumatic event

2. Avoidance
- Emotional "numbing," or feeling as though you don’t care about anything
- Feelings of detachment
- Inability to remember important aspects of the trauma
- Lack of interest in normal activities
- Less expression of moods
- Staying away from places, people, or objects that remind you of the event
- Sense of having no future

3. Arousal
- Difficulty concentrating
- Exaggerated response to things that startle you
- Excess awareness (hypervigilance)
- Irritability or outbursts of anger
- Sleeping difficulties

You also might feel a sense of guilt about the event (including "survivor guilt"), and the following symptoms, which are typical of anxiety, stress, and tension:
- , or excitability
- Dizziness
- Fainting
- Feeling your heart beat in your chest (palpitations)
- Fever
- Headache
- Paleness


This is from just having experienced the Finnish system as an outsider. Everything about it has brought this about.

So... when I tell you that I understand what you mean... it's definitely true. I do.

Amy said...

This post is wonderful and so true. To be hypervigilant for so long is so hard. It is nice to know we are not alone.

Christine said...

I started thearpy 2 years ago, after getting to know me and my situation my thearpist gently (as in not to startle me) suggested that I may suffer from PTSD. One of the things he told me about it that really resonated with me was PTSD the result of trauma that threatens the well being or life of you or someone you love. Of course, ASD has always felt like a threat that I can't quite get my hands around. He told me I need to heal from trauma... how in the crap do I do that I asked. "You tell your story until it no longer has the power to strangle you in fear". I am doing so much better, I have days, and there are new traumas but I tell my story and know I am not alone.

Anonymous said...

Thank you, thank you, thank you! I went searching for "autism mothers PTSD" tonight after a particularly bad rage at the public library this morning that keeps bringing back the intense feelings of helplessness, anxiety, stress, and struggling to safeguard my 3-year-old daughter while my 6-year-old ASD son hurls objects from library counters, screams at librarians that we will NOT pay them any money (I had to pay off 40 cents of my find to check out items), bites me, spits on people, and in the parking lot throws a rock and tries to chase down the librarian who had been helping his sister. Hours later and I am still shaky. I still dissolve into weepiness and tension headache waits in the wings just thinking of not only the rage but even of the kind and gracious librarians who took care of my daughter for me while this was all happening.

Yes, PTSD...or rather OTSD..is alive and well, made worse somehow for me in that it's so hard to prepare for rages when I can't always predict them, and this one came at the end of an excellent and lengthy library visit full of politeness and good decision-making on my son's part. Had I not had to pay down my fine, I am convinced we would have exited the library without incident, but instead this very small thing was a trigger for a rage.

"How on earth do we do it?" indeed!

stimcity said...

Thank you so much AGAIN for sharing this with other parents.

We're NOT crazy - We're tired, stressed, worried and tasked with a thousand things a day to keep ourselves and our kids moving forward.

So grateful.

-Mrs. Sergeant Major
http://stimcity.wordpress.com

Bee said...

Thank you with all my heart. I kind of knew this, but I needed to hear it again.

And just in case anybody was wondering ... trying to raise a child with ASD and then getting diagnosed with it yourself does NOT help matters. (sigh)

am said...

I know everyone's already chimed in on how amazing this post is, but I just wanted to also say thank you... Today is Mother's Day and once again my family wanted to go out to a fancy restaurant... it was always the same scenario-everyone else sits around a beautiful table, eating amazing food, while I'm rocking a screaming child and everyone else eats, stealing glances until I finally decide to retreat to outside or around the block where my son can chase birds or just run... except my son is ten now. And he has his Nintendo DS to keep him busy and he is "fine". He is not two/three/four... he has had early intervention and years of OT... he is OK .. but my stomach is still in knots... and I have a new baby now, he is two and not on the spectrum and as he fusses in his carriage, my throat tightens and I scarf down my steak and everyone wonders why I can't "chill out" because my kids are "fine" -- but I get up and kiss everyone goodbye and say I should probably go... and my 10 year old decides to stay with Grandma and he IS okay... and I take my two year old, and I leave... because I am not okay... and all I could wonder all the way home is why.. why am I not okay? And I thought about this post... and everyone else's stories- and I understood... ... thank you... Happy Mother's Day to you all...

Lena Baron said...

Thank you so very much for this well thought out and perfectly written post. I don't have a child with autism. But I do have PTSD stemming from childhood verbal and physical abuse and then the loss of my twin daughters. I have fought the battle for a long time and I am now working on sorting things out before I cause too much damage to my children's life's. Wish me luck!! Thank you again for this uplifting and informative post!

Nancy Vecchione said...

This post resonated with me personally. Sometimes I just breakdown and cry--it makes me feel so weak--after all I'm not the one who has to face the day to day difficulties my daughters face. What I face is the easy part--but sometimes--yes, I admit it--I feel sorry for myself. I hate dealing with the Social Security System, The welfare system, the Housing Authority, and all the other millions of social service groups and other people who are supposed to help. Today I called a place called 'Residential Living Options' who helped my daughter get her apartment. I was yelled at by a receptionist because her former case worker quit and I(according to her) HAD THE NERVE to ask her to help me find out who the new caseworker was. Even her former supervisors weren't working there anymore. I still don't know who is assigned to her which means if I have questions I get to beat my head against the walls! (well i'm not quite that bad)Does it get better? Is there an end to the stress? No, not that I've found. But then again I could just slough off my responsibilities to my kids because they are technically adults--not sure how anyone can do that but understand the stressors that would cause it. The one thing that helped me when I was first dealing w/my daughters' problems was I got a job working with the profoundly disabled. When I went home to my kids I gave thanks that they were so close to ABLE! Sometimes seeing how bad other people have it makes you stop thinking about yourself. JMHO.

Darius Soon said...

When talking about stress, this really reminds me of a book that I read which I thought really explain well the cause of autism.

This book is called “Healing Code” by Andrew Loyd.

http://www.amazon.com/Healing-Code-Minutes-Success-Relationship/dp/1455502014/ref=sr_1_1?ie=UTF8&qid=1313136940&sr=8-1

Darius Soon
www.autismsingapore.com

Mama D said...

Oh, this is wonderful. I actually questioned whether parents of special needs children suffer from PTSD (I have certainly felt that way myself) on my own blog yesterday, and finding this today was a gift. And OTSD describes it personally. I will so be linking to this post...you have a gift for articulating what generally just swirls in my head.

jph said...

Hi all, new to this blog. I am glad I found it! I am mom to 2 adults young men both DXed Aspergers ages ago. I am also caregiver for my disabled veteran. I was a single mom most of the years in raising the boys (Young men). Okay so that is the basic of my life for the past 20 odd years. I was also often the one in the family as a kid that would try to just keep the peace...so perhaps more than the 22 years of my boys ;).

I teared up when reading this I agree PTSD or OTSD (which I completely relate to daily). My younger son was DXed at age 5 with Aspergers that manifested with very violent physical rages, night terrors, sensory, you name it...I learned about it. Older son was DXed at age 13 after a suicide attempt and a 2 week stay at a psychiatric hospital...when I got the call with the DX, I was ready for it...pretty much expected it...I think I giggled slightly and then breathed a sign of relief...other people saw the concerns...it was not just me, not just his brother.

I could discuss all day other aspects of my life that have been effected, but I am sure we all could.

Here is an ironic aspect of my life you may all be able to appreciate, even though most folks do not get. My disabled Veteran...he is my fiance. He has severe mental health DXs and some days I literally have a 3 ring circus (4 if you count the pets) in my home.

All 3 of my guys have been in psychiatric facilities. I now have binders for each (that need updating) so I can remember better.

So some may ask, why on Earth would I want to take on someone else with similar concerns as my boys have? It comes down to even on his bad days my fiance (will be husband in 3 weeks) ... well he GETS it. We have counselors for all of us and I have my small escapes...to the store, we go out for a milkshake on some better nights...just so he can get me out of the house and I can clear my head. On his bad days...I will be driving.

I am trying to find other folks to friend on Facebook as a support. I do indeed feel VERY alone some days. So many folks do not understand that even when I leave the house, my cell phone has to be with me, it rings, I have to break up a physical fight sometimes with the boys...over the phone, while trying to figure out what we need to fix that whatever issue in the house. Yep I get some interesting looks in the checkout lanes for those calls.

I am rambling, my apologies. I have found that I try to smile daily, go out on the front porch and just be...just take in the peacefulness....the birds, cars going by, the breeze. One days that I get to do that...those help. Oh and the SMILES never forget to find a smile even on the worst of days. Jan

Jennifer Dailing Waite said...

I'll be bringing this up to my shrink when I can make it out of the house for an appointment with her after summer vacation is over, hopefuly about 5 minutes after I drop them of at the first day of school.

I'm a person who doesn't like handwringing and likes to get to work and implement solutions. I often think about how this is just an impossible situation.

I really relate to what you said about support groups. I'm constantly asked if I've been to my local support group. I usually explain that if I have two hours to get out of the house by myself the last thing I want to do with it is go talk about autism. I also can't stand the "angry" corners of the autism community and have found I like to find support online because I can I can pick and choose what parts of it are truly helpful, and I hope I'm a help to others online too.

Jennifer Dailing Waite said...

What disturbs me more is that by 8-year-old NT daughter is experiencing this. I do everything I can to make her childhood better, but I'm really concerned for her.

kumar salil said...

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Regards,

Salil kumar